Don’t Let MS Become Your Whole Life

After I was diagnosed with multiple sclerosis in 2010 I told myself that MS would not become my identity. It would not keep me from doing the things I loved; I would always find a way to beat MS and if I stopped doing something simply because MS was making it hard for me that would mean that MS won. I don’t like to lose. At first, I did really well at maintaining my hobbies but then again, at first, my MS really was not that bad. Occasional pins and needles, drop foot, stuff like that. My attitude was as positive as ever!

Now let’s fast forward to the present; I am sitting in my office chair browsing Facebook when a thought crossed my mind. Who am I? What do I mean by that? I mean what makes me ME? What is my identity? I decided to write up a list; I made 2 columns, one for “who I am now” and one for “who I was before MS”. First I attacked the “who I was before MS” list and that was easy, in fact, I had to stop because there was just too much. Then I moved on to the “who I am now” column. There was significantly less in that category and what was really depressing is that when I took away anything that had to do with multiple sclerosis there really was nothing left.

I feel like I am in the middle of a huge identity crisis, without MS I don’t know who I am! When did this happen? After some thinking, I realized it was a very slow change over the years. Something got hard to do and instead of trying harder to find ways to keep doing those things or exercising my abilities to gain that function back I just let them go. One at a time until that “who I was before MS” list was gone. I sat down for a while and looked at all my old composition books from years ago that I used to sketch and write in. I looked at old folders full of writing, little ideas and sketches for fictional stories my friend and I were working on. Even a novel I was working on! Old pictures and “souvenirs” I kept from different places I have been or different things I have done. It made me feel like I was looking at someone else’s life. I was jealous of “this person”.

So now I have to figure out how to slowly work some of those things back into my life but instead of working from a 6/10 to get back to a 10/10 (or at least an 8) I have to work from a 1/10, maybe even a zero. It’s going to be much more difficult to start all over. “If you don’t use it you loose it.”

So what is my point here? Certainly not to just say, “Oh poor me”, no, I simply feel I should warn others of this slippery slope that is so easy to fall down. Learn from my mistake and spare yourself the extra amount of work I will have to do to get back to feeling like an individual who happens to have MS. Is something getting harder? Something as simple as writing with a pen and paper? Well, don’t just give it up because once it’s gone you will all of a sudden realize how much you miss it and could use it. I wish I could still write with a pen and paper and produce writing a little better than a kindergartener who needs that giant lined paper with the dashes down the middle. Practice doing what you can every day to keep it alive because if you don’t? It will die. Again, “if you don’t use it you loose it”.

Sure, there are many things I used to do that I physically just can not do anymore but at the same time, there is so much more that I could still do if I had been willing to accept that they would just be more difficult. I realize now that it would have been worth the extra effort because feeling like you have no real identity besides a disease is a pretty horrible feeling.

Sign up for emails from MultipleSclerosis.net:

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

I am recently diagnosed. Last May I was in the hospital for 7 days with my first big episode although I suspect, in retrospect that I have been having symptoms on and off for about 5 yrs prior. I am 51
I am the only art teacher in a small urban school that is very close knit, meaning everyone knows everybody…and their business. I am grateful for the community of support of staff and students I have there.
I am trying to maintain my level of job performance for the next few years so I can retire early with 31 years. However, I have determined that I MUST listen to my body, and if I can’t physically do something…I don’t and make adjustments. The students flat out asked what was wrong. I explained in very scientific terms what was going on. “Oh, your being hacked!”. Nuff said. They know. And they help. ( it’s quite amazing- their level of intuitiveness when I am not up to snuff)
Anyway, I have made other adjustmens. I am also a Cross Country coach at another high school, and instead of running, which I cant really do anymore, I bike with my runners, and some days, I walk their routes partway and meet them on the way back.
I have been an avid hiker for decades. I probably won’t be able to “climb” like I used to, but I can still walk 2-4 miles…and have researched beautiful places to do such hiking. If things get worse, I will make further adjustments. My hand cant handle the dog leash, so I take over when the dogs are tired and not as apt to pull whn excited ( they hike with us)
I cant operate the vacuum without it having long term effect on my hands( I guess its the vibration), so I do all the dusting…and, unfortunately, all the cooking.
I love working in the yard, that remains to be seen, as I spent half the summer last year learning to walk again without help, and getting my driving permission back.
Sometimes I get angry about my future. That all the things my husband and I planned for our retirement has been somewhat turned upside down, but each day I try to concentrate on what I CAN do still, which is quite a lot, and not dwell on what I MAY NOT be able to do in the future. I get frustrated to be sure, but I am still lucky to have a great spouse and 2grown boys who are on their own and whom I don’t have to worry about.

Keep making those adjustments, and doing what you are doing. I have been dx’d since 2000. RRMS is very deceiving, because just when I think I feel fine MS rears its ugly head. I go down way down, and I have to fight my way back. I have done it so many times, but as I get older it gets harder and harder to bounce back. My eye still is not the same after the last. bout, but I have to make adjustments just as you suggested. Very Proud of You for having such a “Sunny” outlook so early on in your diagnoses. It makes all the difference. BEST OF LUCK TO YOU!!!!

Amen!!! Well said. I have recently applied to some part time jobs so my mind can stay active and I feel like I am contributing to society!! My purpose was so wrapped up in my job. I don’t NEED that anymore, but now I want it!!

I think I went about half way down that slippery slope before my daughter got through to me. I think I have a lot of atrophy – moving hurts, causes cramps and spasms so I avoid it – and that makes it worse. I wish I knew this a few years ago so I would not be as weak as I am. So – I have a routine I do every day, to at least stop from getting any worse, and hopefully get back at least some of what I have lost. A Fitbit has become a great tool for me – keeps me honest.

I was diagnosed in 2007, I cried my eye doctor, opthtomolgist found it. And as he is explaining it to me, tissue damage and etc..it is still a huge blurr. My daughter just had my first grandbaby and I was scared. Really scared, but I also didn’t want to accept it, because I wanted to go traveling and do so much more. Well here I am now living in Hawaii and growing my own vegetables, I love the weather here and the local people, they have embraced me as well, as I have them. I refuse to dwell on this disease and even though, I have bad days, I still keep moving no matter what! Now I am looking forward to my fourth grandchild to be born on my birthday month and life is soooo good for me now, compared to back then. I believe it’s what you make of your life. I want a positive happy life and that’s what I have, and never will I let MS define who I am…

Thank you so much for sharing your story and being a part of our community! It sounds like you have a wonderful, positive attitude and that you are making your life what you want it to be – kudos to you, we’re glad to have you here. I thought you might like this article, which echoes your sentiments about being positive and surrounding yourself with things that make you happy:https://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed-live-love-laugh/

The more I read about my ms, the more I realize that I will experience change in my ms but at least I know what to possibly expect. It is scary but it isn’t the end of my world.
I have already started to inquire at my employer about disability and what to expect if I am no longer able to work in 10 years. My diagnosis has put everything important in my life into more perspective.
I appreciate what I can do and I now know that there is a possibility I won’t be able to do it and I am ok with it but I am still scared.
Thank you for the words that make it easier for others to understand the struggles of ms.

I am a ceramic artist one of my first symptoms that really pointed to MS was that I lost the ability to throw on the potters wheel. I had just finished making a huge set of dishes and I wasn’t happy with the vegetable bowl and decided to make another. I couldn’t get my hands or arms to co-operate. I decided that MS wasn’t going to keep me from doing the art that I had studied and practiced for 40 years. I went back to my studio sometimes working 8 hours a day. Not throwing but making tile murals, last year I decide I was going to teach myself how to throw again. I can throw small work now, I need to get a electric wheel before I can throw any thing bigger. It’s been 8 years and I can now only work 4 or 5 hours any longer and I’m worthless the next day. I am out there working and plan to stay there, you can do it to. Potter

It’s great to hear so many like-minded MS sufferers (both in the article and the comments).

I have recently been diagnosed with relapse/remitting after a brief spell in teacher training, and the associated stress, brought on my first noticeable relapse (I have had several minor ones which one prompted a mri-but this was not pursued).

I have lived my entire life fighting what I know now was fatigue and cognitive fatigue. Appreciating that I had no real coordination, I pursued an academic career in history (With a 1st and PhD to my name) that later became teaching at primary/elementary level and then came the relapse.

I am now in a bizarre and frankly fortunate position in which I can place my teaching career on the back burner knowing it provoked the relapse. I have, if I’m honest, also avoided the academic lifestyle as I would read in bursts to keep my mind and ideas fresh.

I have the opportunity, in short, to test your theory as I am determined to not let MS define me. I have thought about the diagnosis and although I accept that the fatigue that I experience has placed limits on my career I have a real grasp on what provokes/triggers the disease: reading, stress and physical activities.

I am 36 and have successfully negotiated relapses by sharpening my social skills and developing techniques to diffuse confrontation (I know that I have developed strategies to combat the disease).

I am a keen runner and was soon to readopt this (running short distances and building to increasingly longer ones) As far as my career is concerned, given the above presumed triggers, I am rather naively looking at diving instruction (I’ll be sat down and not prone to excessive confrontation).

I understand that I have acknowledged that MS (or at least my avoidance of its symptoms) has defined who I am and my personality, but I feel that I can pursue a career that does not exacerbate the triggers. MS, I feel, can be avoided and I hope that I am able to continue to negotiate around the triggers.

I can totally relate, Matt. I recently resigned my job after 29 years as a nurse. I feel like someone just chopped off all my limbs. How do I function without my JOB??? Now here’s the funny part: On the whole, I HATED my job! I hated dealing with the non-compliant diabetics who put themselves into kidney failure by their poor choices; the rude family members who dealt with their guilt by threatening to sue one & all; the drug seekers who could laugh & have fun until they saw the nurse coming– then their pain was a 10/10, so hurry, nurse, bring the strongest you’ve got right away, because you have no idea what pain is!
And yet, knowing that I will never
work as a nurse again, I do kind of miss it. It will take some time to create a new identity, but I’ll get there. After all, I’ve got lots of time now.

WOW–just read many of your previous posts. You are incredibly wise and enlightened, especially for person in his 20’s (said with the utmost respect and admiration, really).
I am 55, and was diagnosed 2 years ago (actually have had the disease since I was 31, but that’s another story). You eloquently express so many of the thoughts/feelings I have experienced since my diagnosis.
Today I am having an especially hard time with my loss of identity since I “retired” because of complications from MS. I have a Harvard Law degree, but can’t work.
I try to avoid the pity-party, and not let the things I can no longer do get in the way of the things I can do. Most days, I am successful. But some days are just devastatingly sad.